Taking Koselugo

Kassidy, an 11-year-old living with NF1 PN, looking and reaching up

Kassidy, age 11, living with NF1 PN.
Kassidy is not currently taking Koselugo.

How is Koselugo taken?

Koselugo has
an easy-to-follow
dosing schedule
for a consistent,
everyday routine

Kassidy, an 11-year-old living with NF1 PN, making paper crafts with an adult
Two pills icon

Koselugo is an oral medication taken twice daily, about 12 hours apart.

Fork and knife icon

Koselugo can be taken on an empty stomach or with food.

Glass of water icon

Koselugo capsules must only be swallowed whole with water. They must not be chewed, dissolved, or opened. Taking Koselugo in a different way than instructed may affect how it works.

If your child misses a dose, they should take it as soon as you remember.

  • If it is less than 6 hours before the next scheduled dose, give the next dose at the regular time. Do not make up for the missed dose
  • If your child vomits at any time after taking Koselugo, they should not take an additional dose. The next dose should be taken at the regular time
Image of Tic Tac

Tic Tac® Breath Mint

Image of a Koselugo capsule

Koselugo Capsule

Similar in size to a Tic Tac®, Koselugo can be easy to take.

Images shown to scale.

Tic Tac® and the three-dimensional design are registered trademarks of Ferrero S.A.
Pill Swallowing Guide thumbnail

Get tips for pill swallowing

Help your child feel more comfortable swallowing pills or capsules. Tips on making the process easier are available in this guide.

Download
Doctor Discussion Guide thumbnail

Know what to ask your child's doctor

Being prepared for treatment discussions can help your child get the care they need. Planning what to say in advance can help focus your conversation.

Download the Doctor Discussion Guide for tips to prepare before appointments, including:

  • advice on how to describe your child’s symptoms
  • a simple checklist for tracking symptoms
  • questions to ask about Koselugo treatment
Download guide

Take the next step in your Koselugo journey

Mike Sager, Patient Education ManagerNortheast

Mike Sager
Patient Education
Manager–Northeast

Meet Your Koselugo Team

A team of support specialists are ready to help your child access the care they need.

Learn more
Image of Parent Readiness Kit

Request a Parent Readiness Kit

Get the Parent Readiness Kit, which can provide you and your family with valuable resources and information such as Koselugo dosing, treatment, and available support.

Request a kit
Parent and child at a laptop, actor portrayal

Actor portrayal

Join Educational Events

Attend an educational webinar to learn more about NF1 plexiform neurofibromas, Koselugo, and the support provided to families like yours by the Koselugo team.

Find events

STAY INFORMED ABOUT NF1 PLEXIFORM NEUROFIBROMAS

To receive the latest updates, tools, and tips about NF1 plexiform neurofibromas and Koselugo, please provide us with some information about yourself.

Please enter First Name

Please enter Last Name

Please enter Email

Please enter ZIP code

*Required

Please confirm

important safety information

What are the possible side effects of Koselugo?

Koselugo may cause serious side effects, including:

  • Heart problems. Koselugo can lower the amount of blood pumped by your heart, which is common and can also be severe. Your healthcare provider will do tests before and during treatment to check how well your heart is working. Tell your healthcare provider right away if you get any of the following signs or symptoms: persistent coughing or wheezing, shortness of breath, swelling of your ankles and feet, tiredness, increased heart rate.
  • Eye problems. Koselugo can cause eye problems that can lead to blindness. Your healthcare provider will check your vision before and during treatment. Tell your healthcare provider right away if you get any of the following signs or symptoms: blurred vision, loss of vision, dark spots in your vision (floaters), other changes to your vision.
  • Severe diarrhea. Diarrhea is common with Koselugo and can also be severe. Tell your healthcare provider right away the first time that you get diarrhea during treatment. Your healthcare provider may give you medicine to help control your diarrhea and may tell you to drink more fluids.
  • Skin rash. Skin rashes are common with Koselugo and can also be severe. Tell your healthcare provider if you get any of the following signs or symptoms: rash that covers a large area of your body, peeling skin, blisters.
  • Muscle problems (rhabdomyolysis). Muscle problems are common with Koselugo and can also be severe. Treatment with Koselugo may increase the level of a muscle enzyme in your blood called creatine phosphokinase (CPK) and may be a sign of muscle damage. Your healthcare provider should do a blood test to check your muscle enzyme levels of CPK before you start taking Koselugo and during treatment. Tell your healthcare provider right away if you get any of the following signs or symptoms: muscle aches or pain; muscle spasms and weakness; dark, reddish urine.

Before taking Koselugo, tell your healthcare provider about all your medical conditions, including if you:

  • have heart problems.
  • have eye problems.
  • have liver problems.
  • are pregnant or plan to become pregnant. Koselugo can harm your unborn baby. Your healthcare provider should verify if you/your partner are pregnant before beginning treatment. Ensure you/your partner use effective birth control (contraception) during treatment and for 1 week after your last dose if there is possibility pregnancy could occur. Tell your healthcare provider right away if you/your partner think you may be pregnant.
  • are breastfeeding or plan to breastfeed. It is not known if Koselugo passes into your breast milk. Do not breastfeed during treatment and for 1 week after your last dose. Talk to your healthcare provider about the best way to feed your baby during this time.

Tell your healthcare provider about all the medicines you take, including prescription, over-the-counter medicines, vitamins, or herbal supplements. Especially tell your healthcare provider if you are taking aspirin, blood thinners, or other medicines to treat blood clots. Koselugo contains vitamin E, which may increase risk of bleeding.

What should I avoid while taking Koselugo?

Do not drink grapefruit juice, eat grapefruit, or take supplements with grapefruit or St. John’s Wort during treatment.

Most common side effects include: vomiting, stomach-area pain, nausea, dry skin, muscle and bone pain, feeling of tiredness or lacking energy, fever, sores in your mouth, headache, redness around the fingernails, itching.

These are not all the possible side effects of Koselugo. Call your healthcare provider for medical advice about side effects. Your healthcare provider may change your dose, temporarily stop, or permanently ask you to stop taking Koselugo if you have any of these side effects. You may report side effects to AstraZeneca at 1-800-236-9933 or at https://
us-aereporting.astrazeneca.com or FDA at
1-800-FDA-1088 or www.fda.gov/medwatch.

Indication

What is Koselugo?

Koselugo is a prescription medicine that is used to treat children 2 years of age and older with neurofibromatosis type 1 (NF1) who have plexiform neurofibromas that cannot be completely removed by surgery. It is not known if Koselugo is safe and effective in children under 2 years of age.

Please see Patient Information in the full Prescribing Information for Koselugo (selumetinib).

All families shown in this website have been compensated by Alexion, unless otherwise noted.